"Sometimes when I'm doing something I draw and also listen to music. I like to play with my sisters. Sometimes we go outside to play; sometimes we stay inside to play. When we're at home I'm always with my sisters, but when I'm [at the hospital] I'm not with them. It kind of feels sad." (3/5)
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“We had been discharged to go home from the hospital, so it was in that first week. It came home as a letter saying that the tests revealed that she had sickle cell, but that further testing had to be done. The first step was with the pediatrician's office. They said it seemed that was what it was and so we were referred to [a hematologist]. I felt numb at first. Then it was a lot of crying, disbelief, wondering, and questioning: “If this was a condition that affects one in however many hundred people, why did she have to be that one? How was she the one to pull that straw?” I would look at her lying in her crib so beautiful, and just couldn't fathom that even though my eyes couldn't see what was going on in her bloodstream, there was a condition, such as sickle cell, that she would have to face.” (2/5)
"I first heard about sickle cell while reading 'Things Fall Apart'. In there was a phenomenon referred to as “Ogbanje”. In certain parts of Nigeria, they believe that these spirit children would just come back to torment their parents. They were sick a lot and wouldn't live long. I remember being very struck by that when I first read that book at twelve years old. When Hadassah came into our lives and sickle cell came up as a condition she had, it brought back that memory of the intense sadness I felt at reading 'Things Fall Apart' for the first time. However, I wonder whether that was just a "coming events sometimes cast their shadows". (1/5)
“I have seven siblings. I’m the only one with sickle cell. It’s not too surprising since my parents are Nigerian and Ghanaian, which are two countries with the highest amounts of the gene. In third grade, my teacher asked if she could tell the class about sickle cell and read a book about it. I agreed and after she asked if anyone had questions for me. Everyone stared at me, but no one said anything. Their eyes said it all. I was so ashamed and embarrassed. I grew up in a small town where my family was one of the few families of color and I’m a naturally quiet person. I didn’t want to give others another reason to be outcast. That day I told myself I wouldn't tell anyone in my everyday life unless I needed to, and for most of my life I kept that promise.
During a pain crisis, you don’t have any choice but to be vulnerable. It feels like you're on the verge of death, especially at night when the world sleeps and you’re awake. Your body is fighting a battle within itself and you're left to bare the remains. It shows you that life isn't permanent, so you learn the value of health and to find strength within yourself. Sickle cell has shown me the value of kindness and compassion. I've taken all of the physical and emotional pain to try and see the best in others. You don't always know what someone else is going through. I think one of the hardest parts for me is seeing people younger than me continue to be born with the disease and have to face the lack of treatment. It shows that not much is changing. Pain often feels like the closest thing I know. Even if I can’t change that for myself, I want to try to change it for others.” (2/2) "I would describe sickle cell as an unwanted journey. Being a sibling rather than having the disease is like, instead of a patient you're a helper. You don't want to be in the pain, but you want to take the pain away from the person. It feels good to actually help the person get better rather than not being there at all. You don't want to have the disease either. When [my sister] gets sickle cell [pain] sometimes she has to go to the hospital, so I would do whatever I could, even small things like getting food or something or helping her up. It’s nice to feel needed. Even though you might not have made a big difference in her getting better, at least you helped a little bit along way.” (1/2)
“I wake up in the morning with pain most mornings- my legs hurt, my back hurts. Living in a household with people and being alone, sometimes that's how it is. You can live in a household with older children, with family members: cousins, sisters, brothers, but they don't know what you're going through. They think that sometimes you don't want to get up. Most times you can't, but you have to. They have to go to school, they have to be on time, they have to do their homework, their clothes has to be cleaned, and they have to eat. It's tough, but I wouldn't give it up for anything because according to [health providers], I shouldn't have my kids. They fact that I have them- I'm glad that they're here and that I can take care of them.” (3/3)
“I know now that they say there's no cure or they say that the cure's a bone marrow transplant. For me, there is a cure and it's how you eat. It's eliminating the sugar and the processed foods and the dairy- and to eat natural, eat raw, eat live, and drink lots of water. So, that's the path that I decided to take- natural and working on live and vegan. I find that when I don't eat sugar and I gave up the processed foods and I gave up the dairy, my body has responded better for it.” (2/3)
"I didn't know I had sickle cell growing up. My parents didn't tell me. I remember when [my mom] found out, but I don't know what she found out. I was in second grade and I was having pain. I kept having swelling in my legs and arms and no one could figure out why, so we went to the doctor. When they got the results back they took me outside, told me to have a seat, and closed the door. I remember my mother coming out and having this medication and that's it. I went home. She threw my medication away, gave me some ibuprofen and some heat compresses, and never said a word. She took me care of me because of her profession. She knew how to take of me and what I needed. When I took sixteen, I went to the doctors to get a blood test. I wanted to play basketball. I was terrified of needles. It took about 15 minutes to stick me. When I go back two weeks later they said, "Did anyone ever tell you you have sickle cell disease- something called S.C?" I was so sure that I didn't have it that I made them do [the blood test] again- as terrified as I was. I had it and that's how I found out. I'm 44 and I've lived. I'm still here. I used to be upset with her. I used to resent the fact that I didn't know. I think it would have helped to know, because I knew I was different. I knew something was wrong. I couldn't figure it out. Now I realize she didn't tell me, because she wanted me to live the best life that I could and be unhindered." (1/2)
“Thank God my daughter has not really had any crises. I noticed she deals with it very well, because she sees that I try to deal with it pretty well.” (2/2)
“I've been living with sickle cell for 31 years now. My experience with sickle cell has been difficult, because not only is this a disease that's not recognized nationally or in our communities a lot, it can be difficult with experiences at the hospital and people not having knowledge of it. The hardest parts [are] having pain, daily challenges, like getting up and taking care of my daughter, having people not understand what you're going through personally. Sickle cell may be a disease, but it does not define us individually.” (1/2)
“What lesson I would take from sickle cell would be the idea that I've suffered, so now I know what real pain feels like. So I don't want to harm other folks. I don't want to see other people in pain or certain things in life. What I'm getting through going through this experience is that I'm a little bit more mindful of hurt, of pain, and suffering. I have a lot of frustrations. I get angry a lot, because I feel the injustice in this world is so huge when you look at it, but I think sickle cell has a way of humbling you in many ways. That's the greatest lesson I got from having this illness- a sense of being mindful of other people's pain or hurt. I think the ending for any story is being hopeful for the future. I want to continue to do more. I'm not done.” (5/5)
“I've been kicked out of [the] hospital in the snow. I had a crisis in the middle of the night. I waited twelve hours, because I knew the ER is not the place you want to be. The stigma back then was tough and it still is. I called the ambulance after twelve hours of trying to manage my pain- went in there with a little t-shirt and just my shorts that I was sleeping in. The ambulance took me into the ER. I got there after twelve hours, I was exhausted anyways. They gave me some percocet or something like that. I fell asleep. I woke up with the nurse trying to discharge me like, "The doctor says you're fine. You've got to go. Here's some pills. You've got to leave now." I'm like, “I'm still in pain, my pain is a nine. I still feel pain." I'm still a little tired. I walked in the ER in the waiting room. I'm just trying to meditate away some of the pain. I'm frustrated, because I'm feeling this pain and nobody wants to help me. Moments later the security guard comes in and says. "The nurses say you have to leave." I'm kicked out of the hospital. I'm outside. I did get the chance to go back to sit down with the whole staff there and educate them about sickle cell. I think that does more good. I feel like educating ignorance is one of those things I really feel driven by. I don't like ignorance. I feel like it does a lot of harm no matter what the experience is. Every negative sickle cell experience could have could have been much smoother if people were a little more compassionate or a little bit more knowledgeable about certain things. When you're fighting for your life, running into someone who doesn't know what they're doing is dangerous. We all have those war stories and it's tough to remember them. I don't like remembering these things. It's like nightmarish times.” (4/5)
“Most of the colors I use in my art are from Haiti, because it's a tropical place and it's bright colors all the time. I think the bright colors kind of help me through my depression, anxiety, and a lot of things like that. The art really helps me get through the pain and frustration. A lot of my best work have been during a time of crisis or during a time when I came back from the hospital when I'm feeling miserable. I create something and it's meaningful to me, because it's something that has a lot of my pain in it. The symbolism in my art work varies from time to time, because I switch up my style every few years. Right now I'm working on a puzzle series which is my regular art, but it has black puzzle pieces that come together. Because I am blind in my right eye, I paint the work very large, because I really cannot see very well. I had to re-learn how to draw and how to paint again, because I had a sickle cell crisis and I went blind for about two weeks. My left eye came back, but my right eye never did. There's a lot of things that can happen when you have crises. The way sickle cell affects your body- every warrior is different. For me, I change my art according to what I'm capable to producing. I try to put hidden meaning in my work, but most of the time I avoid trying to explain it, because I like people to find something for themselves in my works. I'm always afraid to come off as pretentious, because I hate that side of the art world where everything is over the top explained as something super deep. For me, art is just my escape.” (3/5)
“My main way of coping is my art. I don't think I would have become a painter without sickle cell being in my life. I started creating when I was a child, because my mom left Haiti when I was a toddler, a real baby, before I even knew her as my mother. She came to Brooklyn, New York and she was there for a long time. When I was around 8-9, she sent for me. I met her for the first time. Because we didn't have that type of relationship where I knew her as a child, I never really communicated with my mother, but every time I got sick she was the only one there for me. My only way of communicating to her was creating her flowers and creating her cards and creating her drawings just to say I love her, but I couldn't communicate that with spoken word. I would communicate that through creativity and creating her something. I think that's where my art came from. It's not about the sales for me as it is having a purpose. Having a purpose when I'm fighting for my life in a hospital bed kind of helps. It's important to have that focus.” (2/5)
“Everybody has a different path when dealing with chronic pain and illness. For me, it's more about trying to survive and trying to overcome the stigma of ‘You can't do this. You can't do that’. When people look at you they see that there's a weakness there. They try to instill it in your mind that you have a certain weakness. That's the first thing for me, trying to overcome those kinds of challenges and trying to have as normal of a life as I can, because I'm dealing with something extra. It's just been fortunate that it's gotten me this far. I turn 43 this year. Most warriors are very happy every time they feel like they're fighting this battle and they're winning. At times, I do get down about the journey, because I lose a lot of friends in the community. I see people who are passing away needlessly, because maybe the health care is not where it needs to be or the science is not paying enough attention to sickle cell or as a community we're not pushing hard enough for what we need. For me, the journey is a process. It's a complicated process.” (1/5)
“I think one of the hardest parts is that in between pain crises and complications, patients look well. It may be hard for others to understand what having a chronic illness like this is all about- friends, family members, teachers, for example. We do whatever we can to help them understand that besides chronic problems that can occur, there are episodic complications where a patient can't go on with their daily lives, because pain stops them or one of the complications. This is the part that the general public doesn't see. To know this is a chronic illness [and] that it interrupts lives [then] the more we can promote continuity of care and treatment options. We hope to modify the disease in the best way we can and even send some onto bone marrow transplant for a curative option. I hope I can continue for many years to come and to help to make a difference in their lives and promoting these treatments”. (APRN, Yale New Haven Children’s Hospital) (3/3)
"[Once] a twelve year old came to clinic with an arrangement of flowers and a card and a big thank you for all I've done for him in his life. For me, I look at it as doing my job and doing what I love and you're there to discuss their care and try to make improvements. When something like that happens it stops you in your tracks. It's really heartwarming to know that the patient and family appreciate what you do for them. Seeing them when they're well and healthy, when they're living life to the fullest. They're playing, they're doing sport activities, they're attending school. They're going to proms and they're graduating high school- that's very rewarding." (APRN, Yale New Haven Children’s Hospital) (2/3)
"The first [crisis] I saw- it's something that never leaves you. Seeing anyone in pain for any reason is difficult, but you know [sickle cell’s] pathophysiology. You know this pain is unique and you know this pain is intense. You just want to help in any way you can to manage this pain. I always like to think there's something we can do to improve the patient's well-being. When conditions progress to life threatening illness or event, that's most difficult for me. There are many, unfortunately. One I can highlight is losing a patient to sickle cell disease at a very young age, watching the progression of her disease complications in the ICU, and trying to help the family through that difficult time. You have to try to stay strong for the patient and the family. You just give it your all and do the best you can. Also, you know how important it is to work as a team and to use everyone on your team to help each other and manage these difficult situations." (APRN, Yale New Haven Children’s Hospital) (1/3)
“With my cancer patients, I can tell them there's a 90 percent chance, but with my sickle cell patients I can't tell them there's X percent chance of a cure. I think that's the most challenging part.” (2/2) (Yale New Haven Children’s Hospital)
"I'm a clinician and being with my patients is what keeps me coming to work everyday. I think in general it's a very satisfying area to come and be able to help people and hopefully get them on the right path. I love to teach so that's another part. [Sickle cell] is the first single gene disorder that was described. It has the potential of immense research and science. It affects a large population of patients and can be a fairly chronic, debilitating condition. I think our goal as a community and as society should be able to focus on how we can take care [of patients], not only currently with what we can do, but to be able to try and cure [sickle cell]." (1/2) (Yale New Haven Children's Hospital)
Sickle Cell Awareness Shirts are now available! Shirts will only be available for purchase for two weeks (until August 25th, 2017). (At least 14 shirts need to be purchased for them to be ordered.) Please share this fundraiser. All proceeds go toward sickle cell awareness and support. Shirts will arrive by the middle of September for Sickle Cell Awareness Month!
https://www.customink.com/fundraising/scstrength "Hole in the Wall made my childhood. When people connect because they have an illness or something wrong, it's a deeper connection. You can actually say, “I might not know what that feels like, but here's what my journey to that point was and this is what I did." It makes a deeper connection. I have a lot of deeper connections with people that I've met two or three summers than people I've known my whole life. It's great! Those are bonds. They're family.
I was ten. I'm eating dino nuggets and this guy comes and sits next to me. At first I'm like, 'He's touching my elbows and why's he just here looking at me?' I'm asking him, "Do you want some nuggets? Sit here and here's some juice. You look like the guy on the juice box. Are you sure that's not you?" I give him the nuggets. People are taking pictures of us. I ask my counselor what's going on. He's like, "You know that's Paul Newman, right?" I'm like, "Oh, that's Paul Newman? I definitely shouldn't have shared these dino nuggets with him. He made the stuff. He's keeping it!" Afterwards, I was star struck, but the whole time I treated him like a normal person, because he treated me like a normal person. He didn't look at me as a kid that had sickle cell. He looked at me like at me as a little kid who was enjoying summer camp and didn't really want to be bothered, because he was eating lunch." (5/5) “I have a biggest fear of dying before I accomplish what I want to accomplish in life. I don't have a fear of dying, because everybody dies. When your time comes, your time comes. I'm completely okay with that. I'm more scared of the fact if I die too early or die before I felt like I accomplished anything in life. I'm getting a lot of things in place for me to have longevity in it. I do music. I want to spread my story and I want to make people feel good. I won't say so much that I want to be famous. It's not about people knowing me. It's about people appreciating me and having it widescale so I can make money. Just being a genuine music artist and a genuine- humble person is a life goal.” (4/5)
"I tell everybody. Sometimes I'm like, "Don't stress me out. Sickle cell is not a good thing for me." Most people don't know what it is. I explain it to them. They just kind of go along with it like, "Alright, cool man. You're not dying, right?" I say, "No, I'm not anytime soon, hopefully."
I was a freshman in college. I missed a lot of school. I was like, "It's never been this bad." It was a reaction to a whole bunch of things. It was the first time that I would probably say that I was scared having sickle cell. I wouldn't give up, but for a couple days, I would just lay there. I was like, "Alright, this is it. This is going to kill me. This is going to be the thing that takes me out." I was ready to go. It's a growing process. I think with anyone that has anything that's limiting them from their true potential, it's always an uphill battle. For me that's what it is, an uphill battle. There's good days, there's bad days, there's terrible days. Overall, it's gotten way easier. I can't say better. It's gotten easier to know that you're living with it as you get older." (3/5) |